Episode 4: Keeping Disability Rights on the National Agenda with the DIIU

In this special episode recorded at UNSW's Diversity Fest, we examine the rising global threats to diversity and inclusion through a disability lens. Join Ebe Ganon in conversation with Professor Jackie Leach Scully (Director, Disability Innovation Institute UNSW), Professor Alistair McEwan (former Disability Royal Commissioner), and Dr Supriya Subramani (University of Sydney) as they unpack everything from Trump's harmful rhetoric to Australia's NDIS challenges, university diversity strategies, and what meaningful allyship actually looks like.

Professor Jackie Leach Scully – Director, Disability Innovation Institute at UNSW. Expert in disability bioethics and the philosophy of embodiment.

Professor Alastair McEwin – Former commissioner on the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Former Australian Disability Discrimination Commissioner.

Dr Supriya Subramani – Ethics researcher at the University of Sydney, examining structural injustice, everyday indignities, and the ethics of belonging.

This episode was recorded at UNSW's 2025 Diversity Fest. Special thanks to the Disability Innovation Institute of UNSW for hosting the event and allowing us to share this important conversation.

This episode discusses discrimination, violence against people with disability, ableism, racism, and systemic oppression. References to deaths of people with disability in institutional settings and COVID-19 discrimination.

Chapters

• 0:00 Introduction with Ebe Ganon
• 3:05 Event opening with Jackie Leach Scully
• 6:07 Keynote by Alastair McEwin
• 19:31 Panel discussion with Jackie Leach Scully, Alastair McEwin, and Supriya Subramani
• 1:03:05 Audience questions
• 1:25:47 Wrap-up with Ebe Ganon

Transcript

Ebe Ganon: Welcome to Higher Hopes, the podcast raising the bar for Australian universities. My name is Ebe Ganon and I'm here to share conversations that lift our expectations and hold our higher education institutions accountable to the standards of inclusion and accessibility we know they can meet.

This week's episode is a little bit different. A while ago, I was invited to join an event hosted by the Disability Innovation Institute of UNSW (DIIU) as part of their annual Diversity Fest. At this event, we came together to discuss the topic of keeping disability rights on the national agenda in the context of rising international resistance against diversity and inclusion.

The DIIU have very kindly agreed for me to share the recording of this event on Higher Hopes so that we can bring this discussion into the higher education context. In a landscape where we have ministerial support and authorising environments for inclusion work in universities, we also experience influence from external factors like policy shifts from the United States around human rights and inclusive practice.

It's important to zoom out sometimes to consider what it actually is that we're working towards in higher education equity work, and also the bigger societal context we're situated in. In this episode, you'll hear an introduction from Professor Jackie Leach Scully, DIIU Director and all-round icon, setting the scene for the event.

You'll then hear from Professor Alastair McEwin, former commissioner on the Disability Royal Commission and a prominent disability community leader. Finally, the bulk of the episode will be a panel discussion between Jackie, Alastair, and Dr Supriya Subramani, who is a researcher in ethics from the University of Sydney.

The discussion is facilitated by me, and of course I couldn't help but bring in some questions and examples from higher education, so look out for those. We cover everything from far-right white supremacy to the autism and Tylenol media discourse to the Disability Royal Commission, university diversity strategies, box-ticking, advocacy, and allyship. Whoever you are, I guarantee there's something in this episode you will find interesting and thought-provoking.

As you're listening, I want you to consider if you can see similar dynamics operating in your work, at your institution – not just for work and advocacy relating to disability rights, but more broadly in the prioritisation of equity and accessibility in the classroom, in the staff room, and in the meeting room.

I've truncated this discussion in parts to fit the format, and if you're keen to watch the entire recording in full, please head over to the DIIU website. And finally, there are some parts of the recording which are a little bit unclear, for which I apologise. As always, you can find the full transcript of the episode at higherhopespod.com. Enjoy.

Jackie Leach Scully: Welcome everybody to this event within the context of UNSW's 2025 Diversity Festival. As usual, I want to begin by acknowledging that we're hosting this event from the lands of the Bidjigal people and welcome those joining us online from other lands with other traditional custodians.

We pay our respects to elders past and present, and we celebrate the diversity of Aboriginal peoples and their ongoing cultures and connections to the lands and waters of New South Wales. As we, in our different communities, work in our different ways towards gathering and sharing knowledge, we acknowledge the diversity of ways of doing that and the ways that contributes to the richness of Australian society.

I'm Professor Jackie Leach Scully. I'm director of the Disability Innovation Institute at UNSW. I'm not going to spend a lot of time talking about the institute because if you're interested in that, you can come and talk to me at the end. But the institute was interested in discussing this particular topic – diversity under threat – because I think you don't need me to tell you that there's increasing evidence of a retreat from what many of us would call progressive values and the progressive movements of the last couple of decades around diversity and inclusion.

For some of us at least, who've been around for long enough, there's a sense of disappointment and disillusionment at seeing some of that progress over the last few decades apparently being whittled away. I thought it would be interesting for us to have an opportunity to discuss that in the context of disability in particular, but also in the broader context of all forms of diversity.

So I am going straight to introduce our keynote speaker, who is Professor Alastair McEwin. He has several paragraphs of bio, but he's reassured me that I can truncate that. But again, that bio shows what an impressive speaker he is. He has extensive experience in disability and human rights, and has held a number of senior management and governance roles in government and non-government sectors. He served as Australia's Disability Discrimination Commissioner at the Australian Human Rights Commission. He was a commissioner on the Royal Commission into violence, abuse, neglect, and exploitation of people with disability. And very luckily for us, he has joined us at UNSW just about a year ago to do some work focusing on translating the findings and recommendations of that Royal Commission into the sorts of reforms that can influence life at UNSW and beyond.

Please join me in welcoming Alastair.

Alastair McEwin: Thank you Jackie. Yes, I'm completely reassured. You never quite get used to hearing your bio read out again and again, and you're always wondering how much more you can add to it. But you know, truncation is fine.

Good afternoon everyone, both to you here in the room – great to see the turnout – and we know we have many people online. I too acknowledge the traditional custodians of the land on which we are, and I also pay my respects to Aboriginal people, First Nations people who are here with us both in the room and online.

I'd like to think that I learned, and still learn, all I need to know about political leadership and how to progress positive social change by watching in a slee on repeat episodes from The West Wing. It was the character of Toby Ziegler, White House communications director, who said: "The world can move or not by changing some words." This highlights to me the power of communication in leadership.

What happens when we see political leaders say things about people with disability that can either harm or progress our fight to keep disability rights on the national agenda? What happens when we don't see political leaders demonstrating the values of human rights such as equality and non-discrimination, participation and inclusion?

Sadly, I'm going to be drawing on real-life examples, because The West Wing, as close to perfection as you can get when it comes to ideal examples of progressing human rights.

Donald Trump has a history of making derogatory comments about people with disability. I'm going to highlight two. Ten years ago – November 2015, to be precise – Trump mocked a journalist with disability in his election campaign. I went back to the YouTube clip this morning to check whether the audience was laughing along with him, and they were. They were joining in when he was mocking a person with disability, a journalist from The New York Times.

Understandably and rightly, the action resulted in strong condemnation from disability advocates and the media, and it's been listed as one of Trump's most effective behaviours.

And this week, very current: Trump claimed that there may be a link between Tylenol – or here, more commonly, Panadol – if used during pregnancy and increased risk. He warned mothers or expectant mothers not to take Tylenol. He also suggested autism rates have risen dramatically over the past two decades, and he made additional controversial statements such as implying lower autism prevalence in Amish and Cuban children is because of the low use of Tylenol and vaccines.

Quite rightly, there's been outrage, and I was pleased to see the calm and measured response from the Australian Chief Medical Officer and the TGA releasing a media statement saying there's no scientific basis for that statement.

At home, we are relatively fortunate in that we don't generally see the same level of attack on people with disability by our own politicians. We often see them speak positively of people with disability and the need to provide better support and be more inclusive. Of course, it's easy to be cynical about their oft-repeated motherhood phrases such as "we must do better" and "we need to be more inclusive". Sadly, when we hear of yet another – again, preventable – death of a person with disability in a group home or hospital, to be cynical I think can be justified when we don't see those statements translate into action and positive change.

We have also seen our politicians here apologise when they have been negative about people with disability, just taking accountability. You may recall in 2024, Prime Minister Albanese apologised after making a taunt during Question Time to the opposition interjecting. He likened it to someone with Tourette syndrome. Rightfully so, there was outrage from disability community members and others, and he came back and apologised.

Who could recall former Prime Minister Scott Morrison's clumsy comment when he said that he was blessed not to have children with disability during a 2022 leader debate? He made the comment in response to a question from a mother about the National Disability Insurance Scheme. Again, upsetting. We never really know how much damage was caused. He apologised, including, as he claims, contacting Dylan Alcott and trying to explain. When you try to explain why you did something, you still wonder whether it's an actual apology or not. However, he acknowledged that what he said was probably not appropriate.

A few more examples. Please bear with me. Pauline Hanson recently called the NDIA – she said it was a scam and a rort – unhelpful comments in my view. Of course, it just continues to fuel the stigma and the negative perception that the wider community has of people with disability.

When I was Disability Discrimination Commissioner, she made some really hurtful comments in 2017 saying that autistic children do not belong in mainstream classrooms and should be in special classrooms where they can get special attention. I'm not going to talk about the word "special", but you can understand why I might have some difficulty with it. I don't see myself as special, and I know most people with disability don't.

Hanson said – and I'll quote it: "It is no good saying that we have to allow these kids" – meaning the autistic kids – "to feel good about themselves without considering the impact it was having on other children around them."

Other politicians, the media, and the disability community and others called for her to apologise, but she wouldn't. She stood by her comments. So in my view, those comments contradicted or are really contradictory to what we see as prevailing current issues in Australia around human rights and what we want for children.

So what does that mean for keeping disability rights on the national agenda? It means a few things. We cannot ignore the international geopolitical and social issues occurring around the world, and we need to constantly be alert to the dangers and risks of letting those issues continue to bring harm to people with disability.

If my understanding and knowledge of what goes on behind the scenes in Washington DC and the White House is drawn only from endlessly watching episodes of The West Wing and hanging onto every word that Press Secretary CJ Cregg said, then I know there are decent and good people there with values that are aligned with human rights, particularly the values of equality and non-discrimination. I know the disability community in the USA is very active and vocal when it comes to responding to attacks on their own people.

Often toxic environments are created by just one person, and it can take time for their negative behaviour to be dealt with – often only years later. We may well say and think, "Oh well, Trump isn't going to be around forever. The next person will be much better." Therein lies the danger. If we don't keep responding and working with our allies, the toxic culture that Trump is driving could well remain after he's no longer president.

This is when it is vital to be aware of where the silent majority stand on issues such as disability rights, and to capture the opportunity to build awareness and knowledge. It is vital for the disability community in Australia to stand in solidarity with our US friends and colleagues with disability and support them in their responses and actions when under attack.

In bringing it closer to home, we have harnessed and maintained opportunity within the political landscape we have here in Australia. While we still have far too few politicians with disability in our parliament, we also have values of decency and fairness. We rarely see our politicians espousing the negativity that we see coming from the White House. We expect our own politicians to be respectful and open-minded when it comes to issues about people with disability.

In reflecting on the disability rights movement here in Australia, there are some significant milestones of where we have kept disability on the national agenda:

• Australia's participation in the drafting of the United Nations Convention on the Rights of Persons with Disabilities, despite the initial reluctance of the Australian Government to be part of the drafting. That changed, and they actively supported people with disability to go to New York and be part of the drafting process. They appointed Rosemary Kayess, who is now our Disability Discrimination Commissioner, as the NGO rep on the official government delegation. Graeme Innes, then Disability Discrimination Commissioner, was part of that, and many NGO representatives from Australia were part of that.
• There was also the Every Australian Counts campaign, early 2010-2012, that saw the establishment of the National Disability Insurance Scheme.
• And more recently, the establishment of the Disability Royal Commission. Advocates and their allies fought long and hard to see that established.

So again, keeping disability rights on the national agenda.

In bringing this to a close, I have every confidence that with such an impressive track record, the disability community and their allies here in Australia will continue to respond strongly to keeping disability rights on the national agenda. This includes sustained and focused attention on seeing governments here take meaningful and proactive approaches to implementation of recommendations from the Disability Royal Commission.

In a world of ever-challenging challenges and distractions, I'm going to leave the last word to CJ Cregg, who, when she was interrupted by someone with an irrelevant question, said: "Do you mind if I get back to what I was actually talking about?"

Thanks.

Ebe Ganon: Thanks, Alastair. Thanks for opening up with a really good overview of the state of play here and where we're really at in both national and international discourses around diversity and inclusion.

I think a really salient point that you made there was around this concept of incrementalism. Every time that we accept something, every time that we think something's okay, every time we don't speak up and suggest that we should be doing things differently, we shift ourselves a little bit further away from the goals that we have in and around the disability rights movement.

I've certainly noticed that this week with the discourse around Tylenol and autism. As an autistic person, when I see that discourse happening, what I see is something quite radical going on in the US that then gets brought into an Australian context. We have politicians coming out and saying, "Oh well, obviously that's not true. We don't have science for it and we shouldn't be blaming parents." But still this undercurrent of disability or autism being the worst possible thing that could be happening to you or your child. Even though we are suggesting that these comments are radical and that they're not based in evidence, there is still this undercurrent of disability being something to avoid and something to hide away. That slowly is undoing the work that we do in the disability movement. So thank you so much for setting up our panel discussion today.

My name's Ebe Ganon. I'm the board chair of Children and Young People with Disability Australia and a disability advocate based in Canberra. As of last week, I'm also part of the UNSW community and have started my PhD in disability studies. So very nice to be in a room full of peers and to be joining such a vibrant community of people committed to disability rights and disability studies as well.

Over the next hour or so, we are going to be talking to our incredible panellists about this topic. We are going to be using a couple of prepared questions. We'll be sourcing some questions from our online audience, and then in the last 20 minutes or so, we'll hand over to the room and there will be a roving mic moving around.

Alastair needs no introduction, and Professor Jackie Leach Scully as the director of the institute needs no introduction either. But I would like to introduce Supriya.

Supriya Subramani's work at Sydney University critically examines structural injustice, everyday indignities, and the ethics of belonging. Her projects explore how emotions, moral epistemology, and everyday indignities influence one's moral self, and how power is negotiated and challenged by individuals, especially in marginalised and minoritised communities, in interpersonal interactions and institutional contexts, particularly in healthcare spaces and communities.

By including Supriya on our panel here, we're really hoping to have a cross-movement conversation around discourse on diversity and inclusion, using disability as a primary example and a launch pad, but also talking more broadly, because we know that the disability rights movement intersects with a whole range of other movements.

Jackie, I want to ask if you have any immediate reflections on Alastair's presentation from just now that you'd like to kick us off with?

Jackie Leach Scully: It's really interesting seeing and thinking of this in the Australian context. As a Brit – I think you can probably tell I'm not from around here – I came to Australia six years ago. Before that I was in the UK, and I have a lot of professional colleagues in Europe and in Australia. From them I'm getting various messages of how this is playing out in different global contexts.

There seems to be a very general retreat or regression from ideals of equality and inclusion and diversity, but they're playing out differently in different places according to the particular histories of places and their particular fears and their particular vulnerabilities.

So in the US, most of it seems to be concentrated on race. That's not the case in the UK where much more of it seems to be around migrants. I know the two overlap, but they're not quite the same. It's not quite playing out like that in Australia either, although obviously what is seen as migrants and aliens are in the news a great deal.

In none of these countries is disability really at the fore. And yet in all of them, you can see an undercurrent of the ways in which disability rights and inclusion are being nibbled away at in very similar ways – and sometimes not in very subtle ways either. I mean, Alastair mentioned Donald Trump and his very gross and obvious behaviour towards people with disability. In other places, it's less crass, but it's still there. It's there in the language and it's there in the inadvertent slips that people sometimes make and then apologise for the next day. It's great that they apologise, but the fact that they made that slip in the first place suggests that there is an underlying issue that needs to be addressed.

That's my first comment anyway.

Ebe Ganon: Thanks Jackie. I think that kind of intersection that you were talking about there, between the way that race and experiences of migrants are perhaps amplified in other jurisdictions – I do see that coming into the way that we look at migration pathways in Australia in the context of disability as well.

The Disability Discrimination Act is currently under review. As some of you might be aware, folk who are coming to Australia through a migration pathway are currently subject to an exemption under the Disability Discrimination Act, where we say that it's okay to refuse people based on their disability status or perhaps the level of support that they might attract. While it doesn't seem so significant or dramatic, it's again part of this undercurrent which reinforces these low expectations for people with disability and continues to sanction this idea that we can just sideline this conversation.

Supriya, I'm wondering if you have any reflections on Alastair's presentation?

Supriya Subramani: Thank you. Listening to Jackie and also listening to Alastair's reflections, for me it just brought in – most of my life I've been in India and in Australia it's been just two years, and my life was never surrounded by Trump or the US, even though it was affected. I'm in India, the Global South – the back and forth of Global North and Global South discourses which definitely is at the centre.

My reflections immediately as I was listening to Alastair are about how white supremacy intersects with fascism – the insurgence of fascism which is growing, especially in the US, and the ways the language has developed further, whether it's in the UK or Western Europe. And again, migrants and race – the things with "other". Anyone who is an "other" becomes the target. The fear of which, when Jackie was reflecting on...

Being in Australia when I came in 2023, with the referendum discourse, what was going around, and then comes the March for Australia, and then the language of migration debate again... When I was looking at how migrants become – especially refugees and asylum seekers – there's the way racism functions. When you don't even acknowledge First Nations people, recognising the dignity of histories or culture in First Nations communities, the settler colonial discourse which we are in, and then comes the language of other intersecting oppressive identities and categories. It's an interlocking system. Disability is at the heart.

As I'm learning with scholars around who are from trans communities, queer and person of colour, Black and Indigenous communities, disabled activists, disabled scholars and activists – the centre is much more of liberation. What needs to happen is collectively looking at how these interlocking systems are understood or need to be understood.

That's what I was understanding as I was reflecting and listening to you. I think that's my initial thought on how we understand the larger geopolitics discourses, but also the ripple effect. We think it's exporting from the US to here, but I think it's not exporting – the breeding ground is already there. It's more of a reflection, critically looking at what we are doing in different contexts, whether it's in India, whether it's Hindu fundamentalism which targets the "other" in different ways. People who are already marginalised with multiple marginalisations and identities become the target and become much more oppressed in these systems.

Ebe Ganon: Yeah, those multiple layers of marginalisation are really interesting. In the Australian context, the way that our discrimination law works, we've got all of these different discrimination acts that are separate. We've got our Disability Discrimination Act, we've got our Sex Discrimination Act. I know one of the recommendations of the Royal Commission, Alastair, was around looking at a broader human rights act. Where do you think that conversation is up to now? And do you see this broader conversation about the threat to diversity coming into that?

Alastair McEwin: Yes. So when we look at what we have currently, the Disability Discrimination Act is based on some of the principles of human rights such as equality and non-discrimination that I spoke about earlier. It doesn't capture the changes we want to see broadly through social change, applying the social model of disability, because it naturally focuses just on discrimination. So it's very much based on an individual act. Even though there are standards, they should be applying to both individuals and organisations. But what we're not seeing is an all-encompassing human rights act.

The Disability Royal Commission recommended a disability rights act. Arguably, we didn't know if we were going to go outside our terms of reference by recommending a human rights act. However, the fundamental thing we want to see is domestic implementation of the UN Convention on the Rights of Persons with Disabilities, leading best practice. It encompasses the social model.

To be honest, I don't care how we implement the UN Convention, whether it's a standalone disability rights act or a broader human rights act. The concern I have with the broader human rights act conversation is we might lose some of the specific things that we want held onto. Naturally this occurs when you're trying to bring everybody into the same tent. However, we've seen other countries enact human rights acts with varying degrees of success.

Fundamentally, we need a framework where we can point to it and then keep having that conversation. The current legislative framework doesn't allow that.

Ebe Ganon: Jackie, in the research community that you work in, do you see this broader global and national influence in the conversation around the role of diversity and inclusion shifting the way research is being undertaken, or conversations that are happening?

Jackie Leach Scully: Yeah, to an extent. I think there's – over the last few years there's been an odd phenomenon, which is that with, I think, all the best intentions, a lot of the original drive and motivation for wanting good things like diversity and inclusion got subsumed under a kind of – I was going to call it acronymisation.

What I mean by that is that we started talking about EDI and DEI in the US and so on. In some ways, I think that was a good thing because it felt like it was becoming part of the language and being embedded. But in retrospect, I think one of the things that it did was drain some of the passion out of it, because it's really hard to get excited and passionate about "we want EDI". You can do that with the fundamental values that are driving it, which are about fairness and justice and equality. These are all really powerful and resonant words, and I think they touch people's hearts and motivate them.

EDI is also something that becomes so anonymised in a way that it's easy to make a monster of it. For those people who are ambivalent or actively hostile towards equality, towards inclusion, you just start bandying that acronym around and it's easy to make it sound like the NSA or the FBI or something like that. It just becomes something that's easy to be a target.

That, I think, is what's happened in some of the areas that I've been looking at. What we need perhaps is to step back a little bit and perhaps even relinquish that acronym and start talking more about the fundamentals of fairness and justice, compassion, equality. I want to bring some of that life back into it, because nobody really is going to say "I'm against fairness" or "I'm against justice". But they might say "I'm against EDI" because I associate it with wokeness or whatever, and therefore I don't like it.

Ebe Ganon: It's really interesting. I certainly see some of those conversations happening in the depths of niche LinkedIn groups full of DEI practitioners. I find it very interesting that it's an acronym that, particularly in the US but increasingly throughout the rest of the world, has been accepted as something that we've sanitised enough to adopt into corporate culture.

I think it really digs at the heart of what started a lot of these movements in the first place, which were radical acts of resistance from movements like the disability rights movement, from the feminist movement, from a whole range of different parts of society that had historically been silenced. By contracting it into this acronym, as you've suggested, what have we lost there?

Supriya, I'm interested – do you see this happening in your work? Are there aspects of what we can call DEI discourse or DEI culture that has started to sanitise the kinds of actions that you see in your work?

Supriya Subramani: So what I've noticed, moving in and out of Europe and in Australia here – I mean, India again, the conversations of caste, affirmative actions, anything around thinking around the questions of equity and justice – but it becomes, as even Jackie said and the way you pitched it, it gets appropriated in certain cultures, especially within institutions.

Now I'm very sceptical. The moment the institution just embraces and uses the word, I'm like "ah, should I not trust this? What are they going to do with that?" So now "belonging" is something which I was holding dear to, but then the institutions have used it. Now they want to measure it. And then I'm like, okay, now I want to step back and think through.

That goes to the question of diversity. For me, the language of diversity has become so tokenistic in many ways, both research-wise but also within the workplace environment. You want to bring diverse communities or diverse groups of people, but you don't change the structure. So what does it do then? It doesn't do anything.

If the language of justice is at the heart of DEI – if that's what I would believe, that if it needs to do something, it needs to have teeth – then we need to focus on structure and the structural ways of functioning. So structural injustice is where we need to address and tackle.

But because, as you pointed out, also as Jackie said, it gets appropriated because institutions don't want to do anything about it. So we have nice policies, we have nice documents, we have all the nice posters to celebrate diversity. We need your language – I mean, this is something with migration health discourse which comes very often. So far you bring good food, so far you bring good language. It's all the tick boxes. But that's enough of the difference we would want to value within the larger institution culture.

I think this goes with other discourses. How much is enough of you, and not your true self? I think that's something I would see within my work, the way we think and the way I embody myself in these white-dominance spaces. What diversity work can do, and it's not doing in itself.

Again, scholars who have been and are engaging much more within institutional practice are well aware of what it doesn't do and what it claims to do.

Ebe Ganon: Yeah. Before I move us to starting to think about what we can do about this and the solutions, I'm interested if there are any perspectives specific to how we're seeing this in higher education, particularly given the context that we are in here.

Universities are really good at producing beautiful, shiny strategies and lovely documents, lovely videos about our attitudes around diversity and inclusion and our organisational values. And those things are important – they set a standard for when people enter the institution. But then you want to see what's behind that. You want to see what the organisation is doing structurally and culturally, not just in a marketing sense.

Jackie or Alastair, do you have any reflections on the higher education context?

Jackie Leach Scully: Possibly not in the direction you're going, but we can come back to that. You turn me. I think one thing I would want to say is that universities are a very, very privileged community. They're a very protected community. Those who, on the whole – and those who live and work within them or study within them – can, I think sometimes get a very comfortable view of what real life is like for a lot of people outside this particular environment.

It's not always protected or comfortable, but in this context, I think it may well be. I think we need to – we can't abandon that, you know, it's good that it's there – but we can use that as an opportunity to say, well, this is a fairly safe place to be. Let's have a close look at some of those concepts that we are using.

Because I think, just like you talking about the corporatisation and so on of that language, at UNSW I have had a couple of occasions when I've just decided to act as a sort of devil's advocate and ask people: inclusion – yeah, why is it good? And people struggle to answer. They know that it's good, but they can't always say why. I think that's a problem, because I think it's good, but we need to be able to articulate that and make an argument for ourselves, let alone to the world outside.

I think we ought to maybe focus a little bit more on equipping people for understanding why we hold these values, as well as making sure that they've done the Moodle and they've got 90% all the way through and therefore they've passed that particular training element.

Alastair McEwin: The issue of when you have conversations with people about inclusion and language – this happened in the Disability Royal Commission, and I'm not going to go too much into the weeds or behind the scenes. However, when you look at the final report, the use of the word, for example, "segregation"...

Segregation has a very strong history among the Black community in America who talked about segregation of white from Black. The disability rights movement also picked it up decades ago. There were commissioners – not myself, obviously – who were uncomfortable with that word and attempted to either sanitise it or not use it, frankly not wanting to deal with the discomfort of what we were trying to achieve.

Sometimes we get so caught up in the use of language, we forget what we're trying to actually achieve. We were trying to stop people with disability from dying if they're segregated. If you are uncomfortable with that word, try and reflect on: well, what are we trying to achieve here?

So I think when I see attempts to sanitise – please do not get me started on the word "disability" and how others want to adapt it to remove the word itself – we now have Inclusive Employment Australia instead of the old Disability Employment Services. Anyway, I'll get off my soapbox.

When I see people try to move away from what is being rightly held with pride by the disability community – I'm disabled and I'm proud, get over it – be alert to the dangers of when a wider section of the community tries to sanitise things because they're uncomfortable. That's the challenge that we need to keep addressing. Anyway, I said I have a lot to say. I will pause.

Ebe Ganon: But I think you raise a really important point there. Certainly, some of that sanitisation actually comes from people who are allies to our community as well, or people who align themselves with our movement or align themselves with the discourse of DEI.

I don't know if you've got a disability reference group or employee group at UNSW. I see a lot of them being called "Ability Networks". And I find that quite euphemistic. Why can't we say disability and why can't we be proud of that word?

But I'm thinking about what you were saying, Jackie, around we need to be able to bring people along on this journey. A lot of the concepts and the discourse that we use when we're talking about diversity and inclusion and accessibility can be impenetrable for some people – people who haven't been exposed to disability lived experience in their life, people who've grown up in communities surrounded by people who are much like themselves.

In the context of diversity being under threat, I see this in a few different categories. We've got the people who are working alongside us. We've got the people who understand. We've got our undecideds in the middle, and then we've got our active detractors on the other side.

I'm wondering, Supriya, in your work – you were talking about breeding grounds for this kind of anti-diversity rhetoric, and some of this white supremacy rhetoric that we're seeing rising not just in the US but here in Australia as well – what role for intervention is there? What do you think we could be doing there to stop this cycle?

Supriya Subramani: This is a huge question. 

Within my workspace, when I'm very focused within the questions of anti-caste, especially in India, when I focus on the upper caste and upper class discourse – or in Australia, very recently I'm engaging with mental health professionals within African communities – the language of racism in itself, first... People who experience racism, and especially migrant communities – sometimes migrant communities are so heterogeneous.

I feel like there's one... Where I think in my own work is: how do migrant communities, especially if I think about certain migrant communities who are well off or relatively better off, how do we work and collaborate and stand in solidarity with First Nations communities and understand and reflect on the struggles which are already ongoing and be part of that? And then there is another whole layer of different kinds of marginalised communities and discourses which are happening. Learning from each other – the collective liberation movements – it happens at different bubbles. I think we need to learn from each other. That's not happening enough.

I think we were talking about this before. Each one wants to be in the comfort zones of wherever you're familiar with and what kind of your identities are with, but we are not expanding and learning from each other. I think that's something we need to do more and more across.

The other is targeting. That's one of the whole things. If a person is called, let's say, a racist or a white supremacist, how do you want to have a conversation with them? How do you want to so-called bring social change within the larger society? It's a big task and it takes time.

Again, I was recently watching Adolescence, and this goes within the whole ideas of toxic masculinity and the incel culture. How do we bring in change? And then that feeds into the whole language of justice. I believe the reason is you need to look at everything, but you're not going to do that – it's a massive job. That means the interdependence, what disability justice scholars have been talking about, is looking at this and learning from each other and then taking us one step at a time to reflect and learn. I think that's something important, but again, I can't answer that question.

Ebe Ganon: No, it's really interesting. In Australia, we love to batch everyone who diverges from the white Australian norm into "other". Whenever we look at the way that we count people, the way that we fill out forms, the way that we do workplace or educational inclusion in universities, we batch all of the equity groups together. There's so much diversity within those groups and also within the micro-communities within them.

But at the same time, when we do collectivise and when we use that cross-movement solidarity to learn from each other and to work towards similar goals like combating toxic discourse around inclusion and diversity, we do get really strong outcomes.

Jackie, I'm keen to hear what you think some of the approaches we could use in bringing some of those people that you mentioned before along the way. How do we make sure that people can answer the question: why is inclusion important?

Jackie Leach Scully: I think we need to open the discussions at a very basic level. In part, as you said, there's that sense of using a language with which people outside our own little bubble are not particularly familiar. We can make assumptions about ways that they understand particular concepts as well.

We should be open to the possibility that we are going to engage in a discussion with, let's say, somebody who might – who you might otherwise not wish to have a discussion with – and come out of it with a slightly changed opinion. Because if you just go in thinking "I'm going to tell them the truth", that's not a real engagement and that's not a proper conversation. And that is difficult.

I've sat in rooms with people telling me that, I don't know, as a person with disability, I cost everybody money. I feel like showing them my tax return when that happened. That I ought not to be taking up the job of a "normal" person, et cetera. And that's actually difficult to sit and hear. But I try to understand where that is coming from. A lot of it's to do with unfamiliarity, sometimes bravado, sometimes it's fear – all that kind of thing.

I think that disability, if I may just say, is unlike some of the other equity cohorts or marginalised groups, however we want to talk about them, because there's still an underlying huge ambivalence about disability.

I think you would have to be very, very extreme racist to say the world would be better off if there were only white people. You'd have to be not at all committed to the survival of the human race if you were to say the world would be better off without women – that's a kind of non-starter.

But it's much easier to say: the world would be better off if there weren't disabilities. And that's not because I'm saying I think the world would be better off without disability, but our language doesn't allow us to do a sort of nuance around that. And to really look very clearly at the fact that we call it disability because there's something negative about the experience of people in that category. That negativity may be entirely due to society's responses and so on, but we still have to deal with the fact that a lot of people – you saw this covertly sometimes, sometimes overtly, during COVID when we were being told about how it was only people with underlying conditions, underlying health conditions, who were dying. Which is not true, but we were told that.

There was sometimes an underlying sense, sometimes an explicit sense of: and that's not such a bad thing, is it? Because the weakest were being got rid of. I think that attitude is still there much more than we're willing to admit. And sometimes that needs to be really tackled head-on, which is deeply uncomfortable, particularly if you are the person embodying that particular marginality and you are engaged in that. But I think we can do it, and if we do do it, we can then say things like, "Well actually I don't cost anybody any money", or whatever the truth is. That would be, I think, useful.

Alastair McEwin: I want to pick up on what Jackie was saying about how disability seems very much in that grey area, or when we talk about the collective approach. I'm going to channel Stella Young, the immortal Stella Young, and paraphrase: when I say with the establishment of the National Disability Insurance Scheme, we've been sold a lie – we've been lied to.

Now let me clarify. When it was established, it was established for the right reasons – providing support to those with high or complex or significant support needs to be more independent or to be able to participate in the wider community. Article 16 of the Convention, to be precise.

But then politicians, media, and the wider community assumed that the National Disability Insurance Scheme was there to fix every single disability problem in Australia, and it was never intended for that. So we've been sold a lie. We need to remind ourselves – and this is the wider community being comfortable because "oh, you've got the NDIS". "Oh, you have a disability, go to the NDIS." You're going to the airport and you need support to go to security – "where's your NDIS support worker?" You go to school – "oh, where's your pathologist?" The list goes on.

Mainstream settings are failing many people with disability. So Jackie, when she talked about that collective approach – disability is dealt with over there. And yet many people think it also... because of the National Disability Insurance... And I'll conclude by saying it has, however, been life-changing for those who are on it and who rightly, deservedly, are on it. However, we now have a huge problem with trying to make sure that the money we're spending is going in the right direction.

So again, it comes back to the point about non-disabled people feeling comfortable because "oh yes, tick a box, NDIS, off you go" – not willing to engage in the uncomfortable conversations that Jackie mentioned, including during COVID.

Ebe Ganon: I think media plays a really big role in that as well, in characterising the NDIS in a particular way. We're always talking about the NDIS on a cost basis. It's a huge line item in the budget. We're spending so much money. But then the next news story in the bulletin is about how many jobs Qantas is going to be creating.

When we have so much data about the huge multiplier effect of NDIS spending, it is this toxic discourse around diversity and inclusion that is behind that. It's saying that we are directing money to individuals and we're selecting those based on an identity or a physical category, and that's not fair. Therefore, we characterise it as a cost as opposed to characterising it as the massive contributor, not only to our economy but also the moral imperative of looking after everyone.

I think the media plays a big role in shaping the views of those undecideds in the middle.

Supriya, I'm wondering how you feel – what about those undecideds, the people who can be swayed either way? How can we be working towards shifting their perspectives more towards inclusivity and supporting the full diversity of our community?

Supriya Subramani: Again, the whole way... I don't know how to fix many things, but it's a moment of reflection and to pause. I think it's about how the ableist way of functioning in the society we are in comes hand in hand along with the capitalist economy we are in, which feeds into this too. Because the more you look at the person's value from the productive – the labour and their productive aspect – which again, you need to make up the language for where this goes, the channelling of where the money goes and the conversation of tax or how each person deserves or not...

Again, I don't have that answer for that, but I think it's where more of intersecting oppressive systems need to be understood closely. Because very often, disability... we can't just be looking at it without looking at the larger oppressive systems, whether it's sexism or whether we are looking at the ableist way of functioning and then heteronormative and patriarchal systems which we are part of. I mean, these are big words, but this is the interlocking system we are sitting with. A person living with disability, it's not just that one identity. That means we need to look at what sustains in itself the loop of oppressive experiences. How do we undo it?

I think, again, my answer – what I was talking about is going back to: how do we address structural injustice? And I think that at the heart is the justice question which we need to look at. So diversity, you can't do without justice. If you want to authentically understand and reflect on diversity, we can't do without justice, I believe.

Ebe Ganon: From your work and your research, do you have a sense of how we can raise the critical consciousness of people in relation to those systems?

Supriya Subramani: My learning or unlearning over the years recently has been much more: people are already doing it really well. What I mean by that is, when I engage with communities, there is so much resistance, and we need to learn more from people how they're resisting already. I think that's something which I might take away. What are the learnings? It depends on different communities, where they're doing and how they're doing and for whom they're doing it. I believe so. And I think that's where the space is for learning and unlearning which we should be part of, or we should just be actively listening.

Ebe: We've had a question from the online audience that I think is relevant here, particularly in that shifting the hearts and minds of folk in the middle, which is: what do you think the role of protest is in this conversation? Feel free, any of you, to jump in.

Alastair: I might begin by reflecting on the disability rights movement, particularly in Australia – and the US is also a good model for the civil rights movement, the disability rights movement. Many wonderful role models, living and past. It was characterised particularly by people who were physically disabled who started making the way to protest.

We've all seen the images of them crawling up the steps of Parliament House, and it did have effects. We started to see change. We started to see the implementation of the Disability Discrimination Act. And what's been really fascinating now is to see the wave of people with intellectual disability. They were the ones who were perhaps marginalised, and they were still stuck in group homes and in institutions in the '80s while those with physical disability were out there protesting.

Protests did play an important role. So now what we're seeing is a growing awareness of what you could almost describe as a different cohort within the disability community. It's wonderful to see the rise of people with intellectual disability. We're seeing more educated, we're seeing them involved in governance. We've still got a lot more work to do. We're doing it here at the University of New South Wales through the DIIU and the Centre for Intellectual Disability Health.

So it's important to reflect on the waves. Yes, the protests were important then. I don't know how important protests are now, or whether they're even necessary. I don't have a fixed view. I'm just reflecting on the different ways of how we've incorporated the different diverse groups within the disability community to see change.

Jackie: There's a kind of ecosystem really of resistance, I guess, resistance and transformation. Some of that is active, out-there-on-the-streets stuff. I think that does some things very well, it does other things not so well. And not everybody can contribute to those sorts of activities either. That's often the case with people with disability – for a variety of reasons, they're not able to take part in those sorts of activities.

There are other ways of, let's say, resisting or changing people's minds – arguing back, perhaps. The danger with something like a large-scale protest is always that you – pardon my language – piss people off who are inconvenienced by that protest. They can't get into work, they can't do this, that, or the other. And you lose their sympathy, you lose their allegiance. So there's a difficult balance there.

I'm not a natural protester. I'm a more natural writer of letters and so on. I like to think that that's also effective, but it could be just because that's how I best operate.

I think one of the best ways of protesting or of resisting is simply being there – being a visible member of that minority, doing something that you might not be anticipated or expected to be able to do.

Ebe: We are going to very shortly move to questions from the room. Thinking about that final group – people who are already with us, people who generally align themselves with the movement and the language of diversity and inclusion and DEI or one of the variations of that acronym, whatever we like to use – what do you think the role of allyship is in this conversation? How would we like to be seeing people working alongside us?

Alastair: I'll give you an example of where we saw positive change for the Deaf community and hard-of-hearing community. In the '80s – maybe the '90s, I can't remember – a politician in WA had a deaf son. And so WA at one point were ahead of providing captions, like movies and in schools and what we now see in terms of live captions.

Again, for me, it's an example of when you've got somebody in a position of power or perceived power, and they are experiencing as an ally, right in front of them, the discrimination their child is experiencing – that's where a lot of the change occurred. But if we sit and wait for every single example like that, we'll probably never get to a more inclusive society.

So allies, for me, allyship – the other factor I've seen is when you talk to your non-disabled peers, when you see them take it up in a respectful and measured way, sometimes you can just step back and let them – without speaking for you – raise the issue, particularly if they have access to environments that you may not have. But that takes sometimes years, particularly when you're trying to influence a collective group of people.

Audience member: Earlier this year I was actually approved for NDIS, which was an 18-month, deficit-based process and horrible. You're basically proving you're disabled. And I guess now seeing in the news these children who are being excluded from the scheme – just your thoughts on that in general. It's just such a horrible process getting onto it. Being on the NDIS can be really beneficial for someone with disability, but getting it is a whole other story.

Alastair: Well, firstly, congratulations. And it's a shame, once again, you've had to go through so many bureaucratic hurdles.

When I reflect on what's happening now – for example, reflect on the Health Minister Mark Butler when he announced the Thriving Kids Program – I think the Thriving Kids Program is a good step in the right direction. I think some of the language he used in his address – and I'll say this to him when I see him – was probably a bit unfortunate.

When we talk about "are those who are somewhat disabled" or "you are too disabled", the line is ever going to be changing and we will never get to where we want to be.

Winding it back and reflecting on what the Health Minister I think is trying to achieve with the program – and I've done some work on it through the Institute – mainstream settings are failing people with disability, and we need to make them more inclusive. And I know I talked about where the line is, but we still need to focus on the NDIS providing support to those who really need it on a tailored basis. If you have significant support needs that are very different from many others, of course you should be able to get an NDIS package.

Many of the things we're trying to achieve – for example, with children with disability, autistic children, children who are nonverbal – I strongly believe can be provided through the mainstream education setting. Not perfect, never will be. But there are many ways you can make mainstream settings more inclusive.

Coming back to your point about now having to prove that you are disabled – there is some movement afoot to make the application process far less burdensome. There's just too much red tape and justifying your disability. I think we've become caught up in the government approach, which is usually quite bureaucratic. Ultimately it should be a relatively straightforward approach to apply for the NDIS and then be able to get your package.

Ebe: Your question's very timely, in amongst all of the announcements that we've had today around the way that eligibility for the scheme is going to be assessed. I think it's very much to be continued on this question, because since the Royal Commission, since the NDIS review, we've been having so many conversations about the same problems over and over again. What we really need is the allyship from folk in decision-making positions, from folk who control the money and the supports, to be moving this conversation forward.

I hear you – we're having this conversation again and again, and people with disability are sharing their experiences again and again to so many different outlets. And it's not always moving us forward.

Scott (audience member): I would like to address the title – getting on the agenda – specifically what has happened with the Royal Commission during and since.

What I have observed since the time the – I think the Chair used a very fancy Latin phrase – functus officio, onto someone else... You could almost hear an audible sigh of relief for people working in service systems, the government agencies. That was all over. Many in the disability community were just exhausted by it, but are starting to come out now.

And I sense have been finding out, almost by accident, that there's a lot of pockets of government initiatives about implementing the Disability Royal Commission. Finding out by accident. Look at who's in the room, and it's flooded with the same people who had the story before the Commission started. So pre-consultation, pre-DRC consultation methods leading to pre-DRC outcomes. The same acts of structural violence against people with disability as occurred that needed the Commission in the first place.

I'm actually finding these deeply insulting to the people who gave their time and stories to the Royal Commission, many who I know have passed.

Questions are: reflections on that prognosis from the panel, and is there an imperative and a window of time in which we need to get really shouty and disruptive before all that work is being erased?

Jackie: I think it's appropriate to voice disappointment about what's happened since the Commission. I'm probably not the right person to make comments about an Australian Royal Commission because I don't know what the normal state of affairs is in terms of outcomes. The sorts of inquiries that we have had in the UK generally end up with a lot of recommendations and nothing very much happens. So I don't know if that's the case with Australia.

The thing I said about an ecosystem is, I think, true – that something like a Royal Commission report is not going to achieve what people hope it will achieve or want it to achieve by itself. But it can sometimes, through disappointing people and angering them and enraging them, achieve the things that we ultimately want to have happen.

Sometimes it's by informing the people who will take notice of that. Among non-disabled friends and colleagues, I remember there was a lot of sort of surprise and also interest at the number of recommendations that came out of the Royal Commission – the 222. "Things are actually that bad that you need that number of recommendations?" And I was like, "Yeah, they really are that bad."

So even at that level, I think it can affect some kind of change. But also, like a lot of people in this room I guess, there's a sense of weariness and tiredness of the length of time it's taking. And I never thought when I was a small deaf child that I would reach the age that I have with so little having changed fundamentally, alongside some other big changes as well.

So that exhaustion that you talk about among the people with disability and the organisations is, I think, an unacknowledged factor in the impact that this constant level of protest and so on that is demanded of us.

Alastair: I have a lot to say. I'll try to be brief. I share your anger, Scott, and I share your frustration, your disappointment. I think the response that we've seen from the government – or all governments – is lukewarm at best. It's really important, particularly for me and I think every person with disability who gave their heart and soul into the processes – we want to honour the effort that they made. They told their story, they put a lot of time and effort into it, they had great hopes.

I can't really go into the internal robust discussion that we had among commissioners. Suffice to say, firstly, in terms of the six commissioners, there were only two commissioners with disability, so I believe we were in the minority – myself and Rhonda Galbally. So that's a problem in itself, you would think, from disability leadership, from governance.

Having said that, Rhonda and I, we knew what the most critical issues were, and then trying to work with other commissioners, some of whom had very little experience with disability... So again, it was a microcosm of what we're trying to achieve in the wider community.

So I would love to know what would be the intervention that we need to cut through hearing almost weekly of another death of somebody who had died in a setting such as a hospital or a group home. Jackie talked about the attitude during COVID – "oh well, they're disabled, would they be better off dead?"

So yes, I still struggle, but most importantly, I want to maintain and honour the fact that we've had the highest – you can't go any further than a Royal Commission. So if we can keep reminding the government of that... When CJ Cregg would say when they try to distract you, come back to the point and say: "Well, here's the Royal Commission report. Here's what people with disability said. Can we just focus on that and move forward?"

Supriya: I mean, I hear, I think it's rage. When you are collecting these stories and then engaged with them – what do we do? How do we hold these institutions and systems accountable? That's something important. And the question is: what is accountability? But then how do we make sure that they are accountable? That kind of discourse one needs to have. I think there's a collective rage in this which I can hear from this. But yeah, the discourse needs to move forward with how do we hold them accountable.

Ebe: From your work beyond disability as a context and thinking about, I suppose, epistemic justice at this point – can you unpack that from your work and talk about what it is that drives our ability to value different perspectives and how that might be a pathway forward?

Supriya: I think one of the questions very often in my own work is: how is the language of difference at the heart? Difference is seen as something – again, the language of "other" – but then you don't want to really hear and listen and acknowledge. That doesn't come through very often. And then in order to really work through the systems – both the end goal... If you want the end goal, let's say migration health scores or justice towards migrants and refugees, asylum seekers – it's not enough to just collect stories because as researchers we are very good at collecting stories and theorising about this. Then how do we hold ourselves accountable in the system?

Again, that's something I've been thinking through and questioning and then working with the communities. Because again, I was talking about how communities already resist and communities are already part of the resistance movements and how do we... How do we facilitate as a researcher? Sometimes you don't have to research everything because you know the answer already. Especially when I look at the poverty impact in India discourse, we already know what poverty is and you don't have to have an RCT – randomised control trial – to prove that poverty exists in order to fix something. Those are some of the questions which I think can work through.

And then again, the stories – as a researcher, what do we theorise and what theories for? Again, that's something as a researcher I come and think through questions.

Ebe: I think also as researchers, you are all excellent at asking lots of questions and discounting the value or the suggestions that you might have for how we might fix them. I've noticed everyone has said at least at one point in this panel, "I don't know how we fix that." And I think that actually we do, and we've been listening to our various communities about it for a long time, and I think the courage in that leadership is really important as well.

We've got time for one more question from the group.

Audience member: My questions are a little bit more in relation to the youth aspect. So at least for myself, as someone who's coming into the disability community because of various different reasons, and really hearing a lot of these stories – not being personally involved, the Royal Commission was a little bit out of my timeframe of advocacy and work in that area – I guess I really want to ask all the panellists really, in terms of this future generation of people who do really want to get involved and want to give a level of being able to support the change that is needed – what can we do?

Ebe: Who wants to kick us off? What can we do? How do we get involved?

Alastair: Oh, me first. Look, don't ask the question because you are the future. You are going to be part of the generational change we want to see.

A couple of things I would say personally: I was also an outsider to the Deaf community. I was raised in a hearing family, which is quite common. Went to a mainstream school predominantly for hearing kids. There were a few deaf kids. I learned sign language properly later in life. And so it took a while, and I realised when I look back: yep, it's a two-way street. I have to trust them and they have to trust me.

So trust is probably the first thing I would say. Give yourself the time to be trusted by others and vice versa.

The other thing I'm observing – and I mentioned earlier about the different waves of movement within the disability community – there will always be evolution of some form, whether it's on language, whether it's pride. "Oh, I'm not disabled." Give yourself time to reflect on what are the barriers you are experiencing, but fundamentally do what you can to understand the history of why we fought so hard for the Convention. It was because of the history of segregation and exclusion.

Yeah, that would be my advice on a personal level – give yourself time. And then also one of the most valuable things for me is forming trusted relationships that I've managed to hold through, and they've been beneficial over time, whether it's ministers or CEOs in the corporate sector, or many friends in the NGO, and of course meeting people like yourself and learning from what you want to do.

Jackie: Very, very similarly – to listen and to become familiar with that community or those communities, and for them to be familiar with you, but not to be too timid. I work and encounter people who are constantly worried about using the wrong language or the wrong word or saying the wrong thing or asking the wrong question about disability.

There was a TV show on in Australia, I think called something like You Can't Ask That. And there was one that was about disability, and that was actually very refreshing. So you can ask those questions that are sometimes very obvious to the person with the impairment but maybe not to people outside. Obviously not doing it in a rude or crass way, but I wouldn't want people with disability to be treated as somehow sort of fragile and delicate and unable to be probed a little bit about their experiences and their opinions.

And people with disability are not all wonderful and angels. Some of them are just bad-tempered people. But you can deal with that.

Ebe: Before I pass to Supriya to talk about it from an allyship perspective, my own unrequested advice is around disability mentorship and leadership.

For folks who are becoming emerging leaders in the disability advocacy community like yourself – just like Alastair was talking about, reflecting on the experiences of those who've come before... Reflecting on the fact that, as Scott was talking about, a lot of us have gotten very tired very quickly. Whilst a lot of disability advocacy feels like a "hurry up and wait" kind of experience, the work and the progress that you make step by step is important and not to get disheartened by progress that might feel slower, particularly as young people. We are very impatient and we want things to be better faster, but there are folks who've been doing this for a very long time and they understand the systems. Learning from our disability elders is really important.

Supriya, do you have any reflections on the allyship context here for folk in the room who are not from the disability community, who don't work in this space? How do you approach this question?

Supriya: I think for me over the years in different spaces, receiving allyship or being part of the joining – it depends on where I move and which group I belong to or not, in different ways.

For me, the first step – well, the last few years I've been back to working with my own communities back in India. My dad is from a Hill Tribe community, so again, I'm an insider and an outsider in different ways. And I think it goes with every other community where I work with, whether it's migration communities or Indigenous communities or refugee communities. So I'm an ally in different ways and not necessarily always okay.

So for me, the big thing is, just as you said – I think when Jackie was talking about just listening and also to learn – but also there is a moment of unlearning that needs to happen a lot. And I think I would say that's my journey, has always been of unlearning and relearning. It's back and forth. And I think that's something which I need to sit with.

Very often it comes with discomfort in different places. When I move into the refugee community, sometimes I am a facilitator, and then sometimes I'm just an observer. And then sometimes I'm not easily... I am very uncomfortable being just an observer because I feel like, "What am I observing? Why am I here? I shouldn't be here", that kind of thing. But then sometimes actually they are amazingly the agents, all the different communities – agents, political agents. It's not like I'm a saviour, nowhere am I a saviour. I think that's – again, this is a discourse within the global health conversations or in bioethics. Sometimes we come with the idea that we are saviours, or the language of brown saviours or black saviours or white saviours. I think that's something which needs to be unlearned a lot. And I think that's something which is a journey in itself.

For my own students when I teach – when I teach public health ethics, the first thing is: how do we do reflective practice and think about power and privilege both in oneself and how do we engage within different spaces is important. I think that's something which I keep practising, and sometimes I do it very badly too.

Jackie: I think I have actually remembered what it was. Things go in waves. And I guarantee if you are working as an activist or advocate or are an ally long enough, you'll see times when there's – it appears to be enormous progress – and other times when it seems like the absolute best you could hope for is not to go back too much. And I think we're in one of those phases at the moment. Hopefully that pattern continues, in that this phase will pass and we'll move on to something else.

But one of the things that a disability activist said to me many, many years ago was that you can't always predict the final outcome of any apparent gain or apparent loss. So you just have to keep doing what you're doing and hope that what you're doing will move things in the right direction. Which means you don't get too overjoyed at the wins, but also you don't get too downcast by the losses, because you can't always predict what the long-term outcome of something is going to be. And that helps, I think, with the sort of consistency of movement and resistance.

Ebe: Can we have a big round of applause for our panel?

Thank you everybody for coming. It's been fantastic. It's certainly been a really big learning experience for me. And I hope you go away interested, perhaps encouraged, to continue the fight for the next however long it's going to take.

Ebe: Thanks for tuning into this episode. I hope you found it interesting and that it raised something new or provocative for you. If it has sparked ideas or actions that you want to take, I'm going to ask you to take out your phone or your notepad, and I ask you to make a note of it now.

You can check the show notes for links to the speakers and panellists from this episode, as well as the DIIU and their work. A big thank you again to the Disability Innovation Institute of UNSW for having me and allowing me to bring this important conversation to a wider audience.

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And if you're keen to back this project, please head over to Higher Hopes by Ebe Ganon on Substack, which you can find via higherhopespod.com.

Until next time, keep dreaming bigger, keep building better, and stay hopeful.

The Higher Hopes Podcast is produced on the traditional lands of the Ngunnawal and Ngambri peoples. I pay my respects to elders past and present, as well as any Aboriginal or Torres Strait Islander people listening today. Sovereignty was never ceded, and this acknowledgement extends to wherever you are listening from. I encourage you to learn about the traditional custodians of your own country. It's our job to support First Nations perspectives and knowledge in the higher education sector, as Aboriginal and Torres Strait Islander people are the original teachers, learners, and researchers on this land.